From darkness to light: COVID-19 survivor shares her story as a patient and clinical trials participant

Henrico resident Kathy White, 61, began feeling sick in March. When she discovered a rash on her arms and legs, she visited her local clinic, fearing an infection. Diagnosed with bronchitis, she was sent home with medication.

But these were the early days of the COVID-19 outbreak in the United States. White’s primary care physician recommended she be tested. The number of cases had been going up, and White was coughing. White and her husband drove to Hampton for the test.

Symptoms worsen

White’s cough quickly worsened, and her body temperature wouldn’t regulate. “I had on two pair of flannel pajamas, a flannel robe, two pair of footies, two blankets, sitting in front of the heater and I could not warm up,” she said. “And I just kept coughing.”

One night she woke up to a sensation she said she’d never forget.

“I got up to go to the bathroom, and it was like the change in altitude on a plane. The weight of the air was on my chest, and I couldn’t breathe,” she said. “My vision was cloudy, blurred.”

In the bathroom, White missed the toilet, fell and injured her ankle. She tried calling out to her husband, but she couldn’t scream.

Back in her bedroom, everything was blurry. “Everything on my nightstand looked like it was falling off. I’m trying to hold everything, so nothing’ll fall, and then it hit me — this stuff isn’t moving,” she said. “It’s me.” That’s when she dialed 9-1-1.

At the hospital, White had a fever and was diagnosed with COVID-19. Isolated in her room following safety precautions, her only connection to her large, close-knit family was through video chats and calls.

“It's such a darkness with this illness,” White said. “It's such a dark place, and it's confusing.”

Staying strong for family

“I kept a lot to myself because I wanted to be strong for my family,” White recalled. “I held so much in. I was telling my family, ‘Everything’s fine, everything’s fine.’ But I was sick.”

The damage to her lungs made talking exhausting. Trying to maintain a positive outlook added to her fatigue. It was hard not to dwell on the plans she’d made for spring.

White and her husband were supposed to go to Texas to see their kids and grandchildren. A long-time dream to attend a horse race with girlfriends was cancelled. And White had a backyard cookout planned for her husband’s birthday, a playlist of his favorite music already assembled.

White credits VCU Health nurses for getting her through the lonely, isolating experience of hospital quarantine. They created a sitcom-style family with roles and campy scenarios. One nurse brought her product for her hair. When another nurse spent an hour at her bedside administering the clinical trial drug sarilumab, they danced to a playlist White had compiled for her husband’s birthday.

“I had four nurses,” White said. “I don't think I would have pulled through if it weren't for them.”

“Minutes into meeting Ms. White, I could tell she had a great sense of humor and we were going to get along seamlessly. We made the best of a bad time together,” said Elizabeth Cox, one of White’s nurses. "If I can create a happy moment for one of my patients, even if it’s just for a few minutes, I feel like I did my job."

Deciding to join a clinical trial was easy

White enrolled in the sarilumab trial at VCU, one of several active clinical trials for COVID-19 patients. Joining a clinical trial, she said, gave her purpose. “I just felt like, that's the least I could do to contribute to cleaning up this mess.”

Sarilumab is approved to treat rheumatoid arthritis, a disease that causes inflammation. Researchers hope it can reduce the dangerous inflammatory effects of COVID-19 on the lungs and keep patients off a ventilator. White was on oxygen while hospitalized but never needed a ventilator to breathe.

VCU Health involved in numerous COVID trials

From the start of the global pandemic, VCU Health clinicians, with the help of the Wright Center, have moved quickly to bring experimental drugs like sarilumab to the hospital for clinical trials. Patients treated at VCU Health have had access to treatments only available at a major research institution. Nearly all VCU Health patients with COVID-19 have volunteered for a trial.

“To be able to survive it, you just feel like you’ve got to do something,” White said.

Though some participants receive a placebo, White is sure she received the experimental medication. Within a week, her lung function started to improve. She’s grateful her treatment was successful, especially seeing the toll the virus took on her providers, who took their own risks to be there for her.

“I started figuring I needed to live for them,” White said. “They were willing to die for me.”

Emotions run deep

White feels guilty about how she may have spread the virus inadvertently before her diagnosis. Even though she’s been given the all-clear by the health department, she still fears going out in public.

“I know I can’t stay in this house forever,” White said. “But I don't want anybody to come to my house, and I don't want to be around anybody, because the thought of passing this to somebody scares me.”

White’s voices quivers at the thought of putting someone else through what she’s been through. She struggles to come to terms with her survival, as she knows others who have lost family and friends. She also worries about the health care providers, who gave her so much hope.

Recovery slow but steady

Now living at home, White still gets winded easily and trembles on occasion. But she’s phasing in her return to work, and she hopes to attend her first horse race this year. She intends to plant her garden, and she looks forward to some good meals.

White wants people to take the coronavirus seriously, but she’s concerned about a world in which we can’t be close — where hugs and handshakes are dangerous. Because that’s exactly what the world needs more of, she said — love, kindness and forgiveness.